Wednesday, May 21, 2014

I had my latest appointment with my other ME/CFS doctor yesterday, Dr. W. My appointments with Dr. W tend to be fairly routine at this point: we check my blood test results, re-fill prescriptions as needed and sometimes tweak my supplements and Rx dosages. The most interesting aspect is receiving my blood test results and following the progress of treatments with actual data.

This time, we tested some key immune markers that hadn't been tested in nearly two years, namely immunoglobulin (IgG) subclasses, and (a more indirect indication of immune health) candida antibodies.

As I've written about before, over the last two years I have gradually increased my "baseline" health. The improvements have been moderate, but certainly noticeable. It's definitely something more than just "getting used to it," although that is a factor too. The improvements have been nothing world-beating, but then again, I would consider it a victory even if I managed to hold steady and not slide backwards. I read about so many of my fellow patients who describe a long, slow slide backwards into poorer and poorer health, and I think that any patient who can at least maintain their baseline should be relatively happy. A slight improvement, like mine, is something to be celebrated.

At the same time, I've been looking for some indication in my blood test results to explain why I've been feeling a little better lately. I continue to be disappointed.

IgG Subclasses

I first had my IgG subclasses tested back in April, 2012--over two years ago. While subclasses 1, 2 and 4 were in the normal ranges, subclass 3 was low (12, with a reference range of 22-178 mg/dL). Now two years later I had it tested again, after years of immune modulating supplements, probiotics, optimal Vitamin D3 levels, and a number of other treatments designed to boost or modulate my immune system, like Equilibrant, ImmunoStim, and others. My new results: 12 again.

Dr. W states that my three other IgG subclasses are also low, although technically not out of range. In each case, the numbers are in the lower third of the reference range, but this is nothing that would strike me as alarming. Those numbers also remained about the same from 2 years ago.

Candida Antibodies

My Candida antibodies have actually gone back up (that's bad) after going down for a while... While candida isn't a direct measure of immune health, candida overgrowth is a solid indicator of a weak immune system. Candida overgrowth simply doesn't occur in people with healthy immune systems.

I used to test my Candida antibodies much more frequently, but my doctor stopped once it became clear that I had a good anti-Candida diet in place and I was also taking daily oral Nystanin for a while. Here are my results from late 2011 and early 2012, alongside my recent results in bold. The test measures three types of antibodies for a complete picture (IgG, IgA, and IgM). Anything 1.0 or over is considered "out of range" on the high side:

Dec. '11Feb. '12Apr. '12May, '14

IgG 1.3 1.2 1.2 1.7

IgA 3.7 3.3 2.6 3.1

IgM 1.4 1.3 1.2 1.0

I supposed I could view these results either positively or negatively. On the one hand, I had been taking Nystatin at the time of the middle two tests (Feb and Apr. 2012). Now, I haven't taken Nystatin for over a year and yet two of the three antibody types (IgA and IgM) are lower than the average of the prior three tests. Could this mean that all my diet and immune modulating work has helped?

On the other hand, IgG antibodies for Candida are higher than they've ever been, including when I was in my acute phase. IgG and IgM antibodies, I believe, are found in the blood. You don't want to see those numbers go up because that could mean candida is becoming systemic. Candida overgrowth in the gut is one thing, but real problems begin when it becomes systemic and enters the blood stream in significant amounts. It is not overly encouraging that IgM antibodies continue to drop, as those antibodies are usually most present in an early infection and one would expect them to wane as a long-term infection continues. (Source).

I will be trying a month-long course of Diflucan to try to stop the Candida. Unlike Nystatin, Diflucan can actually clear candida from the blood, not just the digestive tract. The downside is that it is harsh on the liver and must be used sparingly and under close medical supervision.

These results are just a little frustrating because I have been pretty damned disciplined about my diet and taking probiotics. I would have expected better results. There's not much else I can do (Diflucan is not a permanent solution), and feeling like you don't have any control over a bad situation is the worst feeling of all. (I know, "welcome to ME/CFS," right?)

Other Results

While not exactly related to immune function, I was shocked that my glucose tested high at 102 (range 65-99). I was fasting on the morning of the test, and I have been a saint about sticking to my Paleo diet. Genetically I tend to have high blood sugar, but again, I don't know what else I can do to control this. I know there are blood sugar lowering medicines, but I don't want to add another pharmaceutical.

Blood ammonia levels were also high 50 umol/L (normal range < or = 47). High ammonia levels is a problem according to Dr. Yasko and her methylation protocol. Now I have to take a couple steps back in that protocol as well.

My Thoughts

It's not that I haven't seen any progress in these or previous blood test results. Results like vitamin D3, thyroid, and testosterone levels have been brought back to close-to-optimal levels. And perhaps this explains my slight improvement. But honestly, I won't be happy unless/until I see improvement in my immune system. Like many, I believe that immune dysfunction is at the heart of ME/CFS.

While I know better, sometimes I had allowed myself to imagine that these slight improvements meant I would slowly climb out of this hole and get better and not have to worry about if I'll be able to play with my daughters and go on vacations and continue to work, etc.

As Dr. W says, once you have Candida overgrowth, it is a life-long battle. "It's a nasty, lifelong companion" he always says. The same may be true for my ME/CFS in general. In the best circumstances, you can manage it and hopefully stave off a backward slide and maybe even improve some, but I'm not sure that actually correcting one's immune system to the point of being "cured" is in the cards.

How do we reconcile that with those occasional articles that claim a certain percentage of ME/CFS patients "recover?" (Example) I think the answer is that the surveys that produce those results have different ideas of what it means to "recover" than I do. Probably many of them would already consider me "recovered" because I am more functional than average ME/CFS patient. I can do things.

But I certainly don't consider myself recovered, or even close to it. So that's the rub: a realistic goal for me is to seek to be as healthy as I possibly can, but not to have expectations of ever being able to be carefree about my health again. The daily frustrations and unpredictability of this disease will always be there in one sense or another. The threat of a major relapse will perpetually be my shadow. My task is to carve out as happy of a life as I can within those parameters.

The "realities" that I'm writing about here are not new to me. I've known them for a long time and have probably written about them before in this blog. But I find that I sometimes need to reset my expectations. My blog is called Quixotic because I have a tendency to stay optimistic even in the face of information that tells me I shouldn't be. That's fine, but my challenge is to keep that spirit while at the same time understanding the situation accurately on an intellectual level. With ME/CFS, and many other diseases no doubt, there's so often a conflict between the spirit and the intellect. True peace of mind comes when we find a way to balance the two.

Thursday, May 8, 2014

I've added this book review to my ongoing list of ME/CFS-related book reviews. For the full book review page,click here.

I recently finished Dr. Amy Yasko's latest book Feel Good Nutrigenomics. It was the second book I've read by Dr. Yasko, the other being Autism: Pathways to Recovery.

If you've ever known a true scientist, you know they often struggle to explain their expertise to lay people. Dr. Yasko doesn't seem to have that problem. At this point, she's sitting on at least a decade of experience in explaining nutrigenomics and the "methylation cycle" to lay people. With this book, we see the evolution of Dr. Yasko's theories and her educational style. She is becoming more adept at simplifying this subject with each passing year. The improvement is noticeable over Pathways to Recovery, which was published in 2004.

In Feel Good Nutrigenomics (FGN), Dr. Yasko makes her strongest case yet that "multifactorial" diseases (like Autism, ME/CFS, Parkinsons, etc.) can be attributed, in part, to faulty gene expression. She makes an equally strong case that it is possible to manipulate these genes into expressing themselves 'correctly' again, thus regaining health. This is done by using specific, targeted supplements and diet based on one's genetic profile.

The problem with FGN is that it only addresses the "what" and "why" of nutrigenomics, not the all-important "how." In that sense, it's a regression from Pathways to Recovery. It's almost as if FGN was meant to be the first in a two part series, but there's no mention of another part. So the book leaves the reader frustrated and wanting more. Dr. Yasko gets the reader "charged up" to use her program, and then fails to give so much as a hint as to what the program actually is. If she intended to leave the "how's" of nutrigenomics out of the book, she should have at least briefly offered the reader a guideline for further reading. The book lacks a single sentence addressing the obvious question: "So where do I start?"

For those that have read Pathways to Recovery or some of Yasko's other writings, it's interesting to note the evolution of Dr. Yasko's theories. For instance, the book contains virtually no reference to the role of RNA in the methylation cycle, or to Dr. Yasko's RNA supplements. RNA and RNA supplements were a huge aspect of Dr. Yasko's protocol as of Pathways to Recovery. It makes me wonder if she has discovered something that led her to quietly de-emphasize that aspect of her protocol.
Overall, Feel Good Nutrigenomics would be great for anyone who can't decide if methylation protocols are worth pursuing. But the problem is that most people who have gone as far as purchasing and reading a book on nutrigenomics probably don't need further convincing. They need guidance on how to do it. FGN does nothing for those who want to understand the protocol itself. Ultimately, the promise of a "roadmap" never materializes, rather, the reader is left with a vague sense that a roadmap exists... somewhere.

I still think Dr. Yasko is a brilliant scientist and that her motivations are in the right place. She is at the forefront of a very young science that will continue to increase in importance and popularity throughout all of our lifetimes. Moreover, she seems to be a good person. To her credit, she addresses, head on, those who may have concerns about her motivations and financial incentives, in the last chapter. I respect her for that, and I think she handled the situation well. I believe her.

Here's hoping Dr. Yasko's next book is like FGN in that if further simplifies topics from her past writings, but that it actually covers the "how" of her methylation protocol. Right now, her protocol is spread out across several of her books and literally thousands of posts on her online forum. This needs to be consolidated, updated, and further simplified in one place. (★½)

Monday, May 5, 2014

My bad shortness of breath (SOB) continues and I'm really struggling to pinpoint the cause. It has been going on for over a week, so this is something I clearly should pay more attention to. Maybe this is one of those blog posts that falls under the category of "thinking out loud," but I also want to write my theories down so that next time I have severe SOB I can refer back to this list and see if any of these possible causes were present again. If any readers experience SOB and you have any theories or guesses, I would love to read them in the comments.

Friday, May 2, 2014

I rate my health on a daily basis, and then average those numbers at the end of each month to track my progress toward healing. Generally the trend has been upward over the last two years, although the progress has been uneven and month-over-month improvements have been minuscule. Slowly, those minuscule improvements have accumulated into more significant improvements.

The challenge in tracking health is to make sure that my reference point remains the same and that I'm not simply getting more used to life with ME/CFS. As I've written about before, I try to keep objective measures in place to make sure that doesn't happen. Even still, there were two recent reminders that, while I have improvement with treatment, I have also simply become more accustomed to being ill.

1) Yesterday I went to the local "lab" to have blood drawn. When the nurse checked my pulse, my resting heart rate was 77 bpm. The nurse asked if I had run or jogged to the lab. I said no, and reminded her that I had already been sitting for 10 minutes. She expressed surprise that my resting heart rate was so high because I look "in shape."

(A true "resting heart rate" is measured first thing in the morning before sitting up. I'm using the term loosely here.)

I haven't used my heart rate monitor (HRM) in over a year because I've been focusing on other forms of treatment and pacing and I can't keep up with everything at once. Thinking back to when I was using my HRM, my resting heart rate was usually in the high 70's to mid-80s even back then. (That's actually a pretty good resting heart rate for a PWME, but not good for a healthy man my age.) So despite some improvements over the past year, my resting heart rate really hasn't improved at all. It is still surprisingly high to health care professionals.

2) I've been having shortness of breath (SOB) all week. This is my most mysterious symptom. Despite all my tracking and graphing of SOB over the past few years, I still have no idea why it comes and goes. It seems utterly random.

Tuesday was a very bad day for SOB. I felt hungry, almost desperate, for air all day. I remembered back to a day I felt this same degree of air hunger during my acute phase, just after I had been diagnosed. It was scary. I could think of little else all day and I eventually went to the emergency room of the local hospital, worried that I might need immediate treatment of some kind.

Now that same degree of SOB barely fazes me. Although the sensation of air starvation is equally severe, I simply go about my day as if everything were fine. It has become a part of life.

My conclusion is that while most of my perceived improvement over the last two years is real improvement, at least some small part of it must be attributable to me adapting to life with ME/CFS. I've tried very hard to keep my standards consistent for tracking purposes, but I don't think it's possible to ever keep them perfectly even over time.

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.